Sadly, we’ve heard from Pauline Ovenden’s daughter, Heather, that Pauline has passed away.  Pauline Ovenden, was President of Herefordshire ME/CFS/FMS Group.
 
Pauline was a survivor from the Royal Free Hospital outbreak in 1955.   She was highly articulate, utterly dedicated to the process of informing the public better about ME; and as a Royal Free veteran she carried more authority than the rest of us.  In November 2004 the Hereford Support Group included Pauline’s “Personal Account of the outbreak of ME at the Royal Free Hospital” in their newsletter. 

This was then included in the Worcestershire December 2004 newsletter.
Pauline was a founder member of the Herefordshire ME/CFS/FMS Group 33 years ago, and part of a team that promoted a set of guidelines to local health authorities on ME.  Also, she represented the Herefordshire ME/CFS/FMS Group at NHS Worcestershire and Herefordshire ME/CFS Local Multi-Disciplinary Team (LMDT) steering group meetings, and the West Midlands ME Groups Consortium.
 
After the publication of the Chief Medical Officers report on M.E/C.F.S. in January 2002, the Guardian described how in 1955, Pauline was working at the Royal Free hospital in London when large numbers of staff were felled by a mysterious illness.
 
In 2007 Pauline was awarded the Herefordshire Voluntary Action ‘Volunteer of the Year’ Award in appreciation for her work for sufferers nationally and locally, and on a personal basis.  This was publicised by the ME Association.
 
We understand that Pauline’s funeral is on Friday 1st March at Hereford crematorium, 3pm.

Our group’s friend, Beryl Compton passed away on 17 March.  Beryl and her friends and relatives in the Stanford Bishop area, raised many hundreds of pounds for the Herefordshire CFS/ME/FMS Group and the Worcestershire ME Support Group over the years, plus their bingo sessions raised over £50,000 for the MEA’s Ramsey Research Fund.

Beryl’s funeral service will be held on Wednesday 6 April, at Hereford Crematorium.

In July 2011, the ME Association (MEA) highlighted news from the Ledbury Reporter - “A community hero has raised about £45,000 to help fund research into a neurological illness.  Beryl Compton, of Stanford Bishop, has reached the impressive total over a period of 23 years by organising bingo events with family and friends in the Bishops Frome area for the ME Association.”

In 2004 Dr Charles Shepherd of the MEA presented Beryl with one of the MEA’s champion fundraiser certificates.

21 August 2015

Hereford Group highlighted on the MEA (ME Association)

J Simpson responds to Tony and Pat Adams, Co-chairs, Herefordshire CFS/ME/FMS Group

 ‘It is time for us to take M.E. seriously’ |
Letter to the Hereford Times | 21 August 2015
www.meassociation.org.uk/2015/08/it-is-time-for-us-to-take-m-e-seriously-letter-to-the-hereford-times-21-august-2015/

From the Hereford Times, 21 August 2015/
WELL done, Tony and Pat Adams for highlighting the plight of sufferers of ME and fibromyalgia in Herefordshire (No county facility for these illnesses, Letters, August 6).

A study in Denmark confirmed these opinions:
“In comparison with other chronic illnesses such as multiple sclerosis, end-stage renal disease and heart disease, patients with ME show markedly higher levels of disability” (Quality of Life and Symptom Severity for Individuals…from a Randomised Clinical Trial, RR Taylor, American Journal of Occupational Therapy 2004:58:35-43).

And Professor Nancy Klimas, of the University of Miami, has said:
“There is evidence that the patients with this illness [ME] experience a level of disability that is equal to that of patients with late-stage AIDS, patients undergoing chemotherapy (and) patients with multiple sclerosis,”

What does Herefordshire Clinical Commissioning Group do for us? The answer is nothing.

MS? Come to the clinic.
AIDS? Come to the clinic.
Renal disease? Come to the clinic.
ME? (Worse quality of life than all those.) Close the door on the way out.

J SIMPSON,  Bartestree



HERE’S THE ORIGINAL LETTER BY TONY AND PAT ADAMS: www.herefordtimes.com/news/letters/13581235.No_county_facilities_for_these_illnesses/

From Hereford Times, 08 August 2015

Hereford Group highlighted on AfME -

www.actionforme.org.uk/get-informed/news/daily-press-summary/1m-philosophy-study-into-cfs

Steps to getting M.E./CFS and FM recognised
In a letter to the editor, the co-chairs of a Herefordshire support group for people with M.E./CFS and fibromyalgia highlight the illnesses, aiming to bring them to the attention of the local people. They mention a parliamentary debate on fibromyalgia in July, which was “an important step forward towards getting the condition recognised,” with key points raised at the debate applying to M.E./CFS as well.
Hereford Times, p 32
06/08/15


Full letter from the Hereford Times

www.herefordtimes.com/news/letters/13581235.No_county_facilities_for_these_illnesses/

No county facilities for these illnesses WE are writing, on behalf of members of the Herefordshire CFS/ME/FMS Group, to highlight Chronic Fatigue Syndrome (CFS), Myalgic Encephalomy- elitis (ME), Fibromyalgia Syndrome (FMS)) and to bring them to the notice of Herefordshire people.

Anyone can develop these conditions at any age. They are life-changing, debilitating, and symptoms for all three conditions can include profound exhaustion/fatigue, widespread severe pain, flu-like symptoms, stomach and digestive problems, memory and concentration loss, disturbed/unrefreshing sleep, intolerances/increased sensitivity and more. Non-sufferers find it difficult to appreciate how ill a person is, because we look normal.

There are no facilities/clinics to help people with these illnesses in Herefordshire, and diagnosis is difficult and can take up to three years.

On July 1, there was a parliamentary debate on fibromyalgia, which is an important step forward towards getting the condition recognised throughout the country.

Key points were raised, which not only apply to FMS, but to ME/CFS as well.

• Education and knowledge of FMS/ME/CFS must be improved among GPs and other health professionals to help improve diagnosis of these conditions.

• Strategies should be promoted and developed within the NHS to provide an integrated and holistic service with patient empowerment as key.

• The NHS should aim to set up a network of clinics across the country, so that patients who have a flare-up have somewhere to go for treatment other than A&E or hospital.

Our group meets on the first Saturday of every month (except January), from 2.30pm at the Aspire Community Hub, Canal Road, Hereford, HR1 2EA. Anyone is welcome to attend or check our facebook page on, facebook.com/CFS.ME.FMS.Group for up-to-date information on meetings.

TONY ADAMS & PAT ADAMS Co-chairs, Herefordshire CFS/ME/FMS Group

www.actionforme.org.uk/get-informed/news/daily-press-summary/headmaster-goes-extra-mile-for-me

M.E./CFS support in Hereford
The Herefordshire CFS/M.E./FMS Group is a self-supporting, voluntary organisation which meets at 2.30pm on the first Saturday of every month (except for January) in the Aspire Community Hub, Canal Road, Hereford. A typical meeting will be good humoured and may have a guest speaker on a topic of interest. The next meeting will be on 1 August.
Hereford Times, online
23/07/15

 

Full article in the Hereford Times -

www.herefordtimes.com/news/13494677.Your_Herefordshire_County_Times__Aymestrey_and__Leinthall_Earls_to_Yarkhill__July_23__2015/

THE HEREFORDSHIRE CFS/ME/FMS GROUP – The Herefordshire CFS/ME/ FMS Group is a self-supporting, voluntary organisation which supports those who suffer from chronic fatigue syndrome, myalgic encephalomyelitis, and fibromyalgia syndrome. The group meets regularly at 2.30pm (doors open at 2.15pm) on the first Saturday of every month (except for January) in the Aspire Community Hub (formerly the Canal Road Day Centre) in Canal Road in Hereford. These are debilitating illnesses and symptoms can include profound exhaustion, fatigue, stomach and digestive problems (including irritable bowel syndrome), flu like symptoms, memory and concentration loss, disturbed unrefreshing sleep, intolerances/ increased sensitivity, severe pain, widespread pain and stiffness and many others.

Anyone can develop these illnesses at any age. The causes are not yet fully known, but can develop after trauma, illness and accidents. It must be stressed that the Herefordshire CFS/ME/ FMS Group is a support group that really lives up to its name and includes people from all walks of life.

Members do their best to help fellow sufferers and really care about each other.

If anyone thinks they might show the symptoms of fibromyalgia, chronic fatigue syndrome or myalgic encephalomyelitis, their first action should be to visit their GP.

Treatment is available to ease some symptoms, although they are unlikely to disappear completely. To non-sufferers the presence of CFS, ME and FMS is often not readily identifiable, but group members are fully aware of the problems and can share their experiences.

A typical meeting will be good humoured and may have a guest speaker on a topic of interest but members will always be updated with any relevant news on new research, medications, forthcoming events and absolutely anything that might help to alleviate their symptoms. The next meeting will be on August 1. New members are always welcome.

Anyone with any queries is asked to call Jenni on 01432 271536.

June 2004
 
In May 2003 the government announced a 'cash-injection' of £8.5 million to develop new NHS services for people with M.E. in England. 
The four Primary Care Trusts of Herefordshire, South Worcestershire, Redditch & Bromsgrove, and Wyre Forest placed a bid in April 2004 for a Herefordshire and Worcestershire CFS/M.E. Local Multi-Disciplinary Team (LMDT). 
The Department of Health advised the bid should be reduced.  A revised bid for CFS/ME services was placed in June 2004 (see file below), and accepted. 

Further details are available in our “Extracts from group newsletters giving ‘CFS/ME and the NHS in Worcestershire’ reports” - in the NHS IN Worcestershire section.